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petedensmore78@...
Posts: 1
Joined: Oct 2009

Two of my friends (both mid-30s) were diagnosed with non-hodgkin's follicular lymphoma this year. They are both starting treatment this December. To help keep their spirits up, I would like to collect a bunch of inspirational, successful patient stories and present them to
both friends in the form of a book or on a web site before they start treatment. Would anyone be willing to submit their story and a picture/pictures, or point me in the right direction of where I might find some? I feel this will really give them the hope and courage to beat cancer.

God bless to all. Thank you to all in advance!

talladegadraft
Posts: 1
Joined: Oct 2009

Hi Pete, my name is Bruce and i am a non-hodgkins cancer survivor of 4 years. I would love to help you out with your project. Let me know exactly what your looking for and wanting.
Bruce Benardo

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

i have high grade follicular NHL, i am finished 6 cycles of R CHOP21 and i'm feeling pretty damn good...

i'd just like to tell you some things that i have learned along the way. i would like to stress that everything i say is in my opinion and my own experience, chemo is different for everyone.

i had a lump the size of a small apple in my groin area. i waited nearly 2 years before i did anything about it. there was no problem with this as most FNHL is not normally discovered until it has progressed to the level i was at. it is one of the most treatable cancers, it most lightly wont cause any pain and although it doesn't go away it will never kill you. once it is detected and maintained it is totally manageable.

as i said, i had 6 cycles of R CHOP21 (there are different courses depending on the hospital you are being treated at, i'm sure you will look these up. there is piles of info on the net about nhl), i had the first one in hospital after a battery of tests were carried out. i had a reaction to the rituximab, which is very common, this was counteracted with hydrocortisone, the infussion was slowed down and the rest went smoothly. the whole thing took almost 8 hours. since then i have had chemo as an out patient with nothing to report, plain sailing all the way. it takes 2-3 hours and with bloods and all the rest of the hospital stuff it takes half a day and you get on with the rest of your life. after the third infussion and i had the routine down it was just a mild inconvenience. i drive to and from the hospital and go back to work the next day. i was shocked and paniced a bit when i was diagnosed (survival mode clicked in). but as i've gone through it and researched fnhl i have realized it is definetly not the 'big C'.

- somethings i know now that i wish i'd known then -

# your hair WILL fall out, thats a given (this will start to happen within 2 weeks of first chemo). i made the mistake of thinking i might escape this - i didn't. this was the most disturbing thing that happened me and i'm a man, i cant even imagine what its like for a woman. therefore i would suggest if you want to have a wig see someone now so your hair can be matched and then get your hair cut short. btw, bald is cool, i am going to keep it like this.

# you will be prescribed antisickness meds (motilium and nexium are the ones i got). the nurse will tell you to take them when you need them. from my own experience and all the people i talk to, you should take them everyday, dont stop even it you have no stomack problems - prevention is better than cure, beleive me!

# i'm not the most mentally stable person at the best of times but the chemo and steroids really messed with my head. after the 3rd one and half my family were not talking to me i decided to do something about it. i went to my GP and he prescribed lyrica for anxiety and a mild dose of xanax to help with sleep. this may not be right for you but discuss it with your GP. since then i'm steady as a rock. hind sight is a great thing.

# at the start of treatment i had mounds of energy and took on lots of extra curricular activities including voulenteer work and an advanced driving course, this was a mistake (i made some). now i've had to drop these thing as tiredness has taken over. fatigue will hit you as you progress, you should adjust lifestyle accordingly.

# when i was in hospital a lady in the bed next to me said there were three things to do while on chemo 1/ eat lots and drink lots of water, 2/ sleep whenever you need to, and, 3/ stay away from people who dont cover their mouths when they cough. simple advise and maybe obvious but i've stuck by it and it's worked for me.

# be informed about what youre dealing with. its good to know what the doctors are talking about and be able to question them if need be. don't look into statistics as they are related to people over 60.

thats all i got for the moment. don't worry this isn't anything like as hard as you think it is right now. you will be fine, trust me. also, you will get great help on this site both practical and emotional, stick with it.

please keep us informed, patrick

melaniejill's picture
melaniejill
Posts: 12
Joined: Oct 2009

i will write mine uo tomoro since im off, then ill get back on and paste it to you :-))))

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